I hate ALS

• an·ger

1. displeasure: a strong feeling of grievance and displeasure
2. become or make greatly annoyed: to become or make somebody extremely annoyed

The definition above is how I have been feeling lately. The more my mom's disease progresses, the more anger takes over my body.

The other evening my mom, Jim, and I were talking and they asked why I haven't written on here and I mentioned why. It's not as easy as I thought it would be. That's the only reason I have to give.

Christmas came and went. Mom didn't feel well enough to eat dinner. She has been on the trilogy a lot (the machine which helps her breathing). She did spend time with us in the morning which was nice. Neighbors came by with cookies as a surprise to my mother which was so nice. Lately, I can hear in her voice that the disease is becoming progressive again. Before I could understand her but lately, not so much. Lucky enough, today we received the eye enabled machine that will allow my mother to communicate with us clearly. I will get a video up by Friday of her using the machine. The man should be coming this week to put it all together. In addition, Jim picked up a bracelet called LifeStrength. It is an ID bracelet for my mother. If she can't communicate, medical personnel can scan the ID badge to find out all my mothers information.

I just want people to realize everyday here gets harder for my mom, Jim and I. Everyday is different. It is emotional in so many ways. Jim and I had a conversation about this earlier this evening. As hard as it is to see my mom going through this, it is a true gift to be the people who get to help her everyday and make it easier for her.

I love you mom!

I want a miracle.

Things have been tough lately. Mom's troubles with swallowing is worsening. Her balance is off and if you hold her hand you can feel the muscles deteriorating. I hate ALS. Now that I am not working, the disease is effecting me. I want to be happy for one whole day, that's all but this disease fills you up with anger and sadness. Now this is coming from a caregiver, not a patient. I can't imagine how my mom feels. I see her tears, I listen to what she says but what she thinks about is beyond me. This morning she showed me a video on her phone of a beautiful sunset on her way home from the Mayo Clinic recently. In the video she heard herself speak and she cried, so hard. It sounded much worst than she does in person I must say but I can imagine how she feels hearing herself. She sounds like a different person. Before I forget, I mentioned how she had to visit the Mayo Clinic. She had issues with her feeding tube so they replaced it and not even two days later she had to go back up because the tube got clogged with her medications. Otherwise, mom has been doing well with eating. Not great but well. I would love to see her consume more.

I apologize I haven't written as much. I thought this would help me but it just upsets me more. I want a cure. I want a miracle.

We need more calories people!

Today mom had a nurse come by in the AM. It's always nice when they come so it gives her time to talk to someone else besides Jim and I. Today I went to the beach for a little. Mom rested. When I got home I made some chicken and brussel sprouts. I was hoping mom would eat but she didn't right away. We put a plate aside for her and I suggested we go into the pool. She did! I was so happy she did. It was nice to see her doing things like that. After the pool we sat in the sauna for a little which is great for pain relief. After all of that, she ate which we get excited for when she does. Jim made mom an appointment for mayo this Thursday. The good thing about the mayo clinic is that they see ALS patients all the time where her primary doctor has never had an ALS patient before my mom. This way she could talk about the pain she has had in her stomach and all the other concerns she is having.

I need help! Everyones big concern is how to get food into my mom. She has been maintaining her weight but we need more calories. The benecalorie can be added to Thrive and yogurts but she doesn't like it. We tried to put it through the feeding tube but it just ruins the bag and doesn't go through. Are there any liquid calorie additives for patients with ALS for feeding tube? Please let me know!

 

Delayed

Hey everyone! I apologize for my delayed post but I am in the last two weeks of school for this semester and I went away over the weekend to visit a friend. Mom is doing okay. She is taking in around 1200 calories now. If only we could get her to eat at the least 1500 calories. Today her social worker (who is awesome!) stopped by with a friend of hers, a priest. Although mom was very tired, it was a nice visit.

I will write more this evening :).

All I want for Christmas...

Twenty-two days until Christmas...

Today I woke up early to become a Floridian, I am official. Before I left for the DMV, mom told me she had an cheese omelet and was eating again (she was taking in her formula from her feeding tube). I wish I could describe to you how excited the three of us (Mom, Jim and I) get when my mom has a good day of nutrition. After she told me about her breakfast she told me she was feeling better, getting up and sitting down without a big problem. That made so happy. She showed me then she dug into a Thrive ice cream. It is made for patients with ALS, packed with calories and nutrients. More importantly, it is dairy free. Dairy causes mucus which is again not good for those living with ALS. She finished the whole thing. After the long wait at the DMV, Jim and I grabbed lunch and brought home mom some lunch. She ate it all!! Keeping up these calories makes me so happy because it shows me that mom isn't giving up, she is fighting harder and harder.

This evening when I came in from the gym I sat with my mom and listened to her. I learn a lot from what she has to say, it helps me understand what is going on in her mind and what I could do to help. We talked about how unexplainable the pain is for her, having RA and having to deal with pain all her life and then throwing on a terminal illness like ALS is not a walk in the park or a walk to the mailbox. It is a tough, rough hike through a natural disaster. She told me that she feels like her youth has been taken from her and how she feels like she lost her independence. I agree. I see that, I feel that for her. She is only 55 years old and can't even go to the grocery store and walk the isles without becoming out of breath. I hate to say this but it makes me really dislike the obese lazy people who decide to use wheel chairs to get around and not live a healthy life when they are given the opportunity to do so, unlike my mom who has an illness that took that from her.

I understand what my mom is saying when she says ALS has taken her youth. The way she walks, talks, eats, sleeps, and even breathes has changed completely, as if she is much older than she is. I will tell you this though, she still looks more youthful than ever and has the sense of humor of a 20-something year-old. Although I wish she could be humorous and happy all the time, she has her moments. Tonight she had one when she told me all of this. She cried as I held back my tears for when I wrote this. Blogging helps me release all the sadness inside of me. It makes me smile knowing I can share this with all of you because I am here with her through all of this. I get to hold her hand through this journey.

Tomorrow, she has the nurse I spoke about a few posts ago coming. She called this evening saying she has a box of benecalorie from mom which I am excited about. I will let you all know how everything goes.


All I want for Christmas is a cure for ALS.

Lately...

So last thing I said was that I would post about an article, I will talk about it at the end. I just wanted to give you an update on what's been going on before we get into that.

Thanksgiving

I can't tell everyone this enough but I am so thankful I got to spend Thanksgiving with mom. It has been a long, long while since I got the chance to spend the holidays with her and I am so grateful I can. It was just us three, Mom, Jim (her boyfriend), and I but boy was it nice. Jim and I cooked everything, I made my first turkey! Everything came out amazing. Mom ate some of everything: turkey, brussel sprouts, two kinds of mashed potatoes, onions, stuffing, cranberry sauce and of course, pie. I was so happy she could enjoy it because I know swallowing has been very difficult for her lately. We sat around together, watched football and just enjoyed one another's company.

 

 

The weekend

My moms appetite has been great. She is taking in a lot more of the feeding tube formula to make sure she is getting all her nutrients. In addition, she started eating yogurt. Tonight, she had ravioli and sausage. Although she is eating better than she was, she still needs to take in even more calories than she is.

Today, mom and I went out to the store. Hardly ever does this happen because she gets out of breath quickly or it is difficult for her to do. I was so proud of her. I am very gentle with her. I keep my pace slow as she holds on to me while we walk. She is still smart with me though and said, "we can go faster you know?" I know this but the last thing I want to do is push my mom and she gets out of breath. Anyways, it was Jim's birthday so we got him a birthday cake and we got her hair dye. Mom hasn't dyed her hair since her hair has grown back from the chemo treatments. I thought she looked beautiful with her naturally salt and pepper short hair but I know and always remember how my mom loves messing with her hair and make up. So if anyone was going to dye her hair for the first time since then, I was the one who was going to do it!


The Article

Here is the link: http://www.algemeiner.com/2012/07/05/orthodox-rabbi-may-be-first-als-patient-cured-by-israeli-drug/

Read about it. It is amazing and I hope that this catches on and pray one day it will be less expensive so all patients can do it.

Comment below.

I'll write again soon.

Happy Thanksgiving!

Happy Thanksgiving !

I am thankful for being able to spend the holidays with my mom this year.

I know I promised to post about that article but I had a long day today. I will post that tomorrow! Stay tuned.

Best,

Ashley

Calories, Calories, Calories!

Today my mom had a visit from her speech therapist at the house. She is fantastic! She is truly concerned about my mom and that is what really impressed me the most. She treats my mom like a friend rather than just treating her like a patient. Mom is down to 120 lbs now and the doctor is concerned with her calorie intake. She needs to boost her calorie intake to at least 1500 to maintain her weight. We would like to have her gain a little weight incase she gets sick and can't eat for a few days, she will have some extra weight on her. To gain weight, she will have to take in at least 1800 calories which would be hard to do at first. My plan is to start off slow with her, at least reach 1500 and work our way up. In addition, the doctor suggested we purchase Benecalorie by nestle. It is a small shot of liquid to add to protein shakes or pureed meals which adds 330 calories! Furthermore, I started a calorie tracker for her to make sure she is actually taking in the correct amount of calories.

If you know anyone or live with ALS and have any other tips on how to boost caloric intake, please comment below this post!

Stay tuned! My next post will be later this evening about an article I found on ALS!

"Are you afraid to die?"

So I think you know where this post is heading. My mom had another death conversation with me. These are never easy. It is tough to spin these into the other direction. Basically, she finally came to the conclusion that no matter who you are, if you have ALS or not, you are living til you die. I explained to her that she needs to keep LIVING and quit worrying about dying. There are so many everyday people in the world who look at life as if you just live to die. We live to live a happy life and enjoy the time we have here. This is how I want my mom to start viewing life. Lets face it, ALS patients have a shortened life and of course, now and again they will wonder how long they have. I don't blame them to have those days but I will start to get concerned if my mom starts to think this way more than usual.

Much Support; Lack of Awareness

MUCH SUPPORT

I always looked at support groups as a joke until I attended one for ALS with my mom and her boyfriend. This was my moms first time as well, so I am very happy I got to go with her.

All this time the media has altered my perception of a support group. What I expected to see were emotional patients that are put on the spot to talk about how awful they feel and how sad they are. What I experienced were happy, vibrant people who look at being diagnosed with ALS as  LIVING with ALS. Just because someone has a terminal illness doesn't stop that from living everyday. Sure there are obstacles that are thrown at them but they still get through everyday they have.

I won't go into the inspiring people I met because privacy is a concern but WOW comes to mind. It was great to meet people who are facing the same difficulties as my mom and to meet their caregivers, friends, and family. One person in the group has bulbar like my mom so it is easy to relate to their progression. The group is like a family. They crack jokes with one another like a bunch of comedians. More importantly, they made my mom, her boyfriend, and I feel welcomed into the group.


LACK OF AWARENESS

I can't get over the amount of health professionals and people in the world that have NO idea what ALS is. It is almost like people avoid it because of how ugly of a disease it is and that is why awareness is not spread like breast cancer awareness is. For example, did you know May is ALS awareness month? Most likely you didn't but EVERYONE sponsors and knows about October being breast cancer awareness month. It is unexplainable to me.

When I mention how many health professionals are unaware, let me show you how unaware. My mom is supplied with letters such as this.

 

 

 

This is a letter that is made to give to medical personnel and medical professionals working in an emergency room setting. This is how UNAWARE people really are. 

 

My ultimate goal is to spread awareness and hope those people who are made aware share their knowledge with others. Spreading awareness opens doors for more treatments, more studies, more knowledge about ALS, and hopefully all of that will one day lead to a cure.

 

I hope that you find time to raise awareness. You can do so easily by visiting your local ALS association page. They will have walks, bike races, and other awareness events to help support ALS. Purchase an awareness bracelet at one of the events or through your local ALS association and watch the questions come through. Every little thing helps raise awareness.

 

 

My good friend Mandi wearing her awareness bracelet.

 

 

 

 

Puppy love, Literally.

This morning I woke up, walked into the living room and saw my mom and it made me so happy. Every morning I wake up and see her it brings me much joy. It is an amazing feeling to be able to be here with her. I know I sound like a broken record but it is the truth. After a shower this morning, I came into the house and saw her crying and I didn't know why. I always ask. I am curious and I want to make things better. If I can make her laugh that is a plus. Most of the time I just change the subject because I don't know what else to do. Well, she was crying because of this blog. It was touching. It brought tears to my eyes and it is bringing tears to my eyes as I write this. I love you Mom and I thank you for reading my blog. It is dedicated to you!

Today I spent time doing things around the house, ran some errands, became apart of my mothers community, and just spent time with mom. I caught her playing with Obie, our 9 year-old Yorkshire Terrier. He is still so playful and loving. The love he has for my mom is simply unconditional. If it's late at night and she isn't in bed, he will come out of her bedroom then sit and stare at her like, "UM! It's time for bed!" The reason I am bringing up Obie is because no matter how many people call dogs dumb, I swear to you dogs are brilliant! I feel like Obie was in denial about moms disease for awhile. He would never go on walks with me or anyone without having to legitimately drag him down the street (he was never, ever harmed; calm yourselves). He would continually look back thinking she was going to come sprinting for him. Now that he is through his denial stage, he just hides under the bed because he knows she is unable to take him for a walk. He wants to be around her all the time. In addition, my moms boyfriends dog Mickey, a 10 year-old West Highland Terrier, understands as well. When mom cries, Mickey will go over and sit by her to comfort her. It is unreal how dogs know things.

Mom Update: Today was good. She ate a lot more than normal which is great. She had a protein shake, oatmeal, and a sandwich. No dinner but we left a plate for her. As always, she has a positive energy and everyday she stays smiling. I actually am thinking she should be a stand up comedian. She swears that ALS patients turn into comedians.

What a week!

This past week was busy, busy, busy!

On Saturday 11/16, my Aunt arrived with her boyfriend and I hopped onto the auto train in Virginia with my arrival being Sunday late afternoon. The following day my brother arrived from Alaska. It was awesome to see how happy my mom was having everyone around. The last time we saw my brother was too long ago and the last time the three of us were together was forever ago.

The week went by too fast. My Aunt stayed til Wednesday. One night we had a grilled chicken dinner compliments of my Aunt and her boyfriend. Mom didn't have enough energy to come out to eat but she got to enjoy the company. On Wednesday, my brothers birthday, mom came out to the dining room for a nice Italian dinner and dessert. It was awesome. We all laughed and told stories. It was a great time.

Yesterday, my mom had the energy to come for a drive to the beach. It was a moment I won't forget. My brother held her one arm while I held her other as we walked up the boarded ramp and overlooked the ocean. It was beautiful. It didn't last long, but the time it did I could see how happy it made her. Afterwards, we stopped by a river near The Chart House and spotted a dolphin. We took some pictures of all of us together. It was a gorgeous view. When we came back home, we cooked up some food by the pool while my mom rested in bed with the sliding door open so she was still apart of the fun but she came outside here and there. She ate as much as she could. She hardly eats because of pain, so it is rewarding when she does!

 

 

 

 

Today was my brothers last day. It was hard to say good-bye. My mom kept saying to herself, "I won't cry, I won't cry," but we all knew she would. Afterwards, I gave my mom comfort and she took a nice long nap as I cleaned up around the house. Later in the evening, she was very emotional and told us the reason she cries is not because someone is leaving but because she doesn't want to die. When she talks about death, it breaks my heart into pieces but I have to hold it all back. I want her to live everyday in happiness, that is why I am here. Do I blame her to think that way? Absolutely not. I can't imagine the pain she has gone through going through breast cancer and immediately being diagnosed with ALS after chemo treatments. I don't know if I mentioned but she has lived with RA (rheumatoid arthritis) most of her life. Now she has to live with the pain of RA and the painful progressive disease ALS.

I think the hardest part about all of this is that I have a front row seat. When I lived in New Jersey, I was away from it. I was in the nose bleed section asking others what was happening. Now that I am here, I see and hear everything my mom is going through. It is much harder than I imagined. I am here though, and I wouldn't change it for the world.

 

 

My name is Ashley and my 55 year old mother has ALS.

My Introduction

Hello. My name is Ashley. I am a 24 year old who was living in South Jersey until recently when I decided to make a move to Florida to be with my mom, a 55 year old diagnosed with ALS (amyotrophic lateral sclerosis).




Mom and I during my visit in Oct. 2013

What is ALS?
Does Lou Gehrig's disease ring a bell? Lou Gehrig was a professional baseball player for the New York Yankees who was diagnosed with the disease in the 1930's. Many people are unaware of this progressive neurodegenerative disease. The disease damages the neuromuscular system which allows the human body to move (i.e. breathing, swallowing, running, walking, talking). Over time, the disease causes motor neurons to disappear so muscles do not receive signals and gradually paralyze the body. There are different types of ALS. My mother has Progressive Bulbar Palsy (PBP). PBP begins by attacking the controls of chewing, swallowing, and breathing.


How to pronounce the name amyotrophic lateral sclerosis (ah-my-uh-TRO-fik LA-tuh-rul skluh-RO-sis)

A is for without
MYO for muscle
TROPHIC for nourishment
LATERAL for side
SCLEROSIS for hardening or scarring

My Wake Up Call

After a few months of knowing my mother had ALS, I was in denial about it. I didn't realize how terrible it really was. One day, I was at work and someone hugged me and said,  "I am so sorry to hear about your mom." It hit me, my mom is living with ALS. I reached out to my boss and was lucky enough to get two weeks off in October 2013. During those two weeks, I witnessed my mom struggle with breathing, swallowing, eating, walking, talking, and her feeding tube even fell out. It was tough. It was heartbreaking and I didn't know what I could do. I am thankful for that visit because if I didn't get the chance to see, I wouldn't be with her today and I would still be in denial.

Mom found "the one!"

 

ALS is a full-time job for her. She uses several breathing machines, a machine to clear her lungs, a machine to clear mucus, and an oxygen machine while she sleeps. In addition, she has a wheel chair and powered bed(as shown in above picture) to help move her up and keep her going. She can't take her medicine orally but smart enough and lucky enough my mother has a feeding tube for that. All her water, medications, and nutritional meals are through the feeding tube that was placed in her stomach by the Mayo Clinic in Jacksonville in the summer of 2013. Without that, she would be without these everyday needs. Her speech is alright. I understand her and her boyfriend understands her but if she were to answer the phone, the person on the other line wouldn't have a clue. I have heard her say before, "I have ALS, I have a hard time speaking." Who was on the other line? Someone calling from a doctors office. You'd be surprised how many people in the medical industry have NO clue what ALS is.

 

Why I Am Blogging?

I am blogging to keep my family and friends updated with how my mother is living with ALS. I got this idea from my sister-in-law who is all the way in Alaska who blogs about how my nephews, niece, my brother and herself are doing. In addition, I am hoping this blog will help spread awareness.